U.S. Begins to Fill Huge Data Gap on HIV Among Transgender People

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Until recently, trying to find good information about HIV among transgender people was an exercise in frustration. Few studies have looked in depth at trans women and men living with or at risk for HIV, and the Centers for Disease Control and Prevention (CDC) website long lacked the kind of detailed data available for other population groups.

"As a country, we've been slow to understand and accept gender diversity," said Tonia Poteat, Ph.D., PA-C, M.P.H., of Johns Hopkins University, one of the foremost experts on HIV among trans people. "Therefore, researchers and public health practitioners have only recently begun to acknowledge the importance of identifying transgender people within the data we do have and to begin to collect data specifically among transgender people."

Small studies, as well as the reported experiences of providers and advocates who work with the trans community, indicate that trans women have high HIV rates. However, it has been hard to put this into numbers -- and even less is known about trans men. Partly, this has been due to a failure to look for the data, but how trans women and men are identified has also played a role.

Importantly, over the past few years, more public health agencies have recognized the need to collect data about trans people with HIV, and new approaches to doing it have evolved.

New Approaches to Identifying Transgender People With HIV

Traditionally, public health workers classified trans women along with gay and bisexual men in the "men who have sex with men" (MSM) category. This unwieldy wording was intended to recognize that many cisgender men who are at risk for acquiring HIV through sex with men do not, in fact, self-identify as gay or bisexual. Trans women, of course, do not self-identify as men at all, and many simply identify as women, not as trans women.

A newer approach, known as the two-step method, asks both how people currently describe their gender and what gender they were assigned at birth. If these are not the same, the person is assumed to fall under the trans umbrella.

"Asking both allows maximum identification of trans people within populations by simply looking for people whose gender identity and birth sex differ," Madeline Deutsch, M.D., M.P.H., clinical director at the University of California San Francisco's Center of Excellence for Transgender Health, told TheBody.com.

Deutsch's team used this method to reevaluate data from the pivotal iPrEx PrEP (pre-exposure prophylaxis) trial, which showed that daily Truvada (tenofovir/emtricitabine) dramatically reduces the risk of HIV infection in so-called MSM.

The initial published iPrEx report said there were just 29 trans women among the study's 2,499 participants. But using the two-step approach, Deutsch's team identified 339 people who were assigned male at birth but now identify as women, trans or "travesti" (preferred by some South American participants) or use feminizing hormones.

Implementing These New Approaches

To improve the available data, these identification approaches need to be broadly implemented. Deutsch emphasized, "Unless we identify transgender people in all contexts of demographic data collection -- the U.S. census, checking in at the doctor's office, enrolling in a study, visiting an HIV testing van -- we will be unable to run queries using transgender status and gender identity as variables to see if there is a difference in the rate of HIV infection, participation in prevention or PrEP programs, adherence to medication or viral suppression."

The CDC is working with health departments and health care providers to meet the need for more reliable data on HIV among transgender people, according to CDC spokesperson Paul Fulton.

This includes revising the CDC's National HIV Surveillance System, the primary source for monitoring HIV trends in the U.S., to allow reporting of both sex at birth and current gender identity, developing guidance for state and local health departments tasked with collecting this data from health care providers and informing providers about the importance of collecting complete data on sex and gender identity, Fulton said. The CDC offers funding and technical assistance to help state and local health departments collect such information.

With its latest update in April 2017, the CDC's "HIV Among Transgender People" fact sheet now includes some of the most detailed data available.

"All federal agencies that collect data could incorporate the two-step method, building on the lessons learned by the CDC," Poteat told TheBody.com.

However, she added, "It is also important to do studies tailored specifically for transgender people. This would allow large enough sample sizes for robust estimates and could address the specific needs of transgender people."

What the Data Show: HIV Prevalence and Incidence Rates Among Trans People

The CDC's revised fact sheet says that between 2009 and 2014, 2,351 transgender people were diagnosed with HIV in the U.S. (although this estimate is limited by the fact that many people living with HIV have never been tested and diagnosed). Among the group identified, 1,974 (84%) were trans women, 361 (15%) were trans men and 16 (under 1%) reported another gender identity. Half the HIV-positive trans women and 58% of the trans men were African American, and 29% and 15%, respectively, were Latinx.

These numbers come from a report published at the end of last year, "Diagnosed HIV Infection in Transgender Adults and Adolescents: Results from the National HIV Surveillance System, 2009-2014."

The fact sheet adds that about one-in-five trans women in the U.S. are living with HIV, based on a meta-analysis published in 2013, and that trans people are three times more likely to test positive than the population as a whole.

Addressing Unique Health Care Challenges Among Trans People With HIV

The trans population's high HIV incidence and prevalence rates show why it's important to collect independent data so its unique health care challenges can be identified and addressed. The Transgender Law Center (TLC)'s Positively Trans survey was one of the first efforts to learn more about the lives and experiences of transgender people living with HIV.

"Through our research, we are making it clear that transgender people, and particularly transgender women of color, face unique challenges in living with HIV, and we must be at the table when policy and funding decisions are made," said TLC senior strategist Cecilia Chung, who spearheaded the project.

TLC's needs-assessment survey, conducted online in both English and Spanish, received complete responses from 157 participants from 35 states and Puerto Rico, 84% of them trans women or transfeminine and 12% transmasculine. Survey participants had been living with HIV for 12 years on average. About a third each were African-American, Latinx and white.

Over 40% reported going six months or more without medical care since their HIV diagnosis, and 20% did not have health insurance coverage. Many said they skipped care due to cost or fear of discrimination or mistreatment by providers. Asked about their most pressing health concerns, respondents prioritized gender-affirming and non-discriminatory health care, hormone therapy and mental health care above HIV treatment. A common concern was how hormone therapy might interact with antiretroviral medications.

Chung said that members of the Positively Trans project had met with the CDC to emphasize the need for more complete data on trans people and programs to meet their needs.

"Including transgender men living with HIV at these meetings seemed to be the most effective way to point out that we need federal agencies to be mindful that our community is not monolithic and we must develop more accurate data collection," she told TheBody.com.

Uncertainty Ahead for Trans HIV Data and Services in the Trump Era

Fulton noted that the CDC recently awarded five-year grants to seven community-based organizations to implement comprehensive HIV prevention programs for young transgender people of color and their partners.

But, since the election, there is a "veil of uncertainty" about whether the CDC and the U.S. Health Resources and Services Administration will continue with efforts to be more inclusive of trans people, according to Chung.

"It is clear in our report that trans people without access to Affordable Care Act coverage and Medicaid expansion, those who have a history of incarceration and those who have experienced discrimination from providers are less likely to be virally suppressed," she said. "If our national HIV plan continues to have 'Getting to Zero' as the goal, we must make health care accessible and welcoming to all."

Liz Highleyman is a San Francisco-based health journalist who has covered HIV and viral hepatitis for more than 20 years. She is editor of HIVandHepatitis.com and has written for publications including POZ, BETA, Aidsmap, Positively Aware and the Bay Area Reporter_. She attended Harvard School of Public Health and has worked with ACT UP/Boston and other HIV advocacy groups._